Soania Mathur

Soania Mathur Parkinson’s Disease Patient and Physician “For me it began at 27 years of age, a slight tremor in my right pinky finger, just as I was completing my residency in family practice and starting my career as a physician. At first I was more medically intrigued with experiencing a symptom that I had heard so many patients describe.

But then my concern grew as the tremor went from sporadic to continuous and that’s when I began to experience medicine from the patient’s perspective. The frustration at the lack of control I had over my own body, the desperation I felt when told of the diagnosis of Young Onset Parkinson’s Disease and the fear of the future. And through it all, relentlessly, the tremor progressed.

The effects transcended into my work, my social and family life. It made itself known from the moment I awoke until I fell asleep at night. All during a period of time that I felt I should have been in the prime of my life. A decade into my journey I began to realize that although I had no control over my diagnosis, I did have control over how I faced this challenge. This acceptance allowed me to [...] continue the story

Annette McKinnon

Annette McKinnon After enduring progressive symptoms for two years, when I was finally diagnosed with RA at 32 it was a life changing event. It led me to build a rewarding career in market research over the past 25 years. For the first few years of dealing with the RA I felt alone: isolated and in the dark.

Once I joined the online world I found communities and support to be plentiful. I also discovered that I liked to share my experiences with others in ways that I hoped would be helpful. That motivated me to become active — both online and in real life — talking about support, advocacy and sources of information.

Now I share my experiences through my blog “Your Gold Watch – Rheutired”. It’s about being a patient and having a chronic disease in a general sense that could apply to almost any ailment.

I hope that my efforts will help patients to deal with challenges they face in healthcare, and enable them to become self-managers of their health issues and active participants in bringing change.

Here are some of the ways I have learned about being an active patient.

I’m a volunteer member of Patient Partners in Arthritis. This group provides trained patient [...] continue the story

Colleen Young – Online Social Innovator and Community Manager

Colleen Young – Online Social Innovator and Community Manager “The most exciting innovation of the connected health era is people talking with each other.” ~ Susannah Fox from the Pew Research Center.

Thanks to the social web, we can build close-knit and far-reaching networks and join communities online when we need help or advice easier and more quickly than ever before.

As an online community manager and social innovator, Colleen Young witnesses this phenomenon every day. Patients, caregivers, family, friends, and other supporters are increasingly taking part in online health communities to share information and find support, and invariably build a collective knowledge that is second to none.

Colleen is the Founder of Health Care Social Media Canada (#hcsmca) and Manager of Social Innovation at ELLICSR, Princess Margaret Hospital. Colleen is an online community manager who builds virtual health communities that thrive. Health Care Social Media Canada is a community of practice exceeding 7000 members who share and learn via online social tools, making health care more open and connected. As the Community Manager for Canadian Virtual Hospice, Colleen built an community for patients and caregivers seeking online peer support at the end of life and through bereavement.

Talking about how to build and sustain a successful online [...] continue the story

Megan Oates

Megan Oates Diagnosed with cancer at 17, author and budding philanthropist Megan Alexandria Oates decided to pen her own memoir ‘Would You Like Your Cancer?’ Provocative and honest, she crafted a must-read story that is entertaining in its boldness and captivating in its intimacy. She shares the innermost details of her journey through cancer and recovery, hoping to inspire, raise awareness and positively impact the lives of others.

Megan is a twenty-something survivor, young adult advocate and leader in her community. She contributes regularly to Thyroid Cancer Canada’s ‘Thry’vors’ Newsletter and has spoken at events held by the Canadian Cancer Society and Valerie’s Flutter Foundation. Through her story, the experience of cancer is all the more real, invoking compassion, sparking conversation and helping to change the lives of cancer patients and survivors. Making a Difference Being diagnosed with cancer in her teens, Megan struggled with fear, anxiety and feelings of isolation. To help support patients who are courageously battling cancer, and enable those who love and care for them to better understand the many different impacts of this disease, Megan has provided copies of her book to several hospital libraries across Canada and the United States. She hopes her story helps to strengthen and [...] continue the story

Christine Janus

Christine Janus Christine Janus has been the Executive Director of the Canadian Skin Patient Alliance (CSPA) since 2007. A skin patient herself, she has grown the ‘for patients, by patients’ organization to a nationwide support, education and advocacy organization serving affiliated patient organizations and the millions of Canadians living with skin conditions, diseases and traumas. Christine is an active patient advocate and works on a number of committees with the Best Medicines Coalition, has represented skin cancer patients on the Canadian Cancer Action Network and is currently involved in 2013 with the formation of a federal patient voice initiative. Christine represents skin patients in Canada here at home and globally, seeking to always pass on the message that skin disease is more than skin deep.

Under Christine’s leadership the CSPA has won 3 awards –for its excellent website, for its widely read national magazine ” Canadian Skin” (à propeau in French), and this last year for a very thorough analysis of access issues faced by dermatology patients in Canada called “ Skin Deep : A Report Card on Access to Dermatological Care and Treatment in Canada”. Under her watch the CSPA also offered skin, hair and nail patients their very own conference [...] continue the story